Living With Conditions We Can Do Better
I had no idea what newborn screening was until my daughter was six months old. I remembered it being done, but I didn't know why it was done. But, when Tori was six months old she was diagnosed with Krabbe Leukodystrophy. That day we learned that she could have had a very different life and story had she been screened for her rare disease at birth. She could have had a life-saving transplant. We, as her parents, would have had a chance to try to save her life. Instead, she went to Heaven at just twenty-months of age. There was NOTHING we could do to stop it and that was beyond devastating.
Tori should be turning six this July. Instead, we've lived longer without her than we did with her.
I have spent the past four years fighting for a better newborn screening program. I attend each newborn screening advisory board meeting. I have helped introduce three different bills to improve the newborn screening program and to make sure that every baby is screened for Krabbe. I'm doing everything I can to make sure that more diseases are added and that screening becomes equal, no matter the ZIP code. I can't imagine doing anything else in my daughter's honor.
I didn't know what newborn screening was until it was too late for my daughter, but now it has become one of the most important passions in my life. I won't stop fighting until every baby has an equal chance at life - something they currently don't have. We can do better.
By Lesa Brackbill